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Vulvar primary site:?
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Vulvar primary site:?

› Forums › General Melanoma Community › Vulvar primary site:?

  • Post
    • October 12, 2020 at 1:33 pm
    LB in Seattle
    Participant
      Anyone else here who had their primary on their vulva? Mine was on my left labia minora; considered a dermal lesion. This is a rare primary location (and I have had a local recurrence in the lymph nodes recently, but my doc says that this does not constitute a metastasis). I am curious to find other women who’ve had their primary site there. Having the discussion about immune therapy in two weeks now that I’ve had the recurrence after a year and a half of clean scans. I found the enlarged lymph node about a month before the next scan would have been scheduled.

      I am also a daughter of a parent who died of melanoma. While this suggests a genetic cause for mine, testing revealed no known genetic markers. So if you’ve had this primary site, any chance you had a parent with melanoma as well?

      Thanks for any responses.

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    • Replies
        • October 15, 2020 at 1:21 am
        gopher38
        Participant
          Well, I’m in the 50% that wouldn’t have any chance of personal experience here, but I hate to see a post go without a reply, so just posting to wish you good luck with the immunotherapy. Sounds like not too many people have this site as a primary, but lots of people have experience with immunotherapy, so you’ll probably get more help on questions around that. Best of luck.
          • October 23, 2020 at 8:13 pm
          THMoore
          Participant
            A friend of mine had the tumor in the same area around 5 years ago. Never had melanoma before. She was shocked. But after surgery, a round of radiation and NIVO she has been clear every since. She was around 60 when diagnosed. Hang tough.
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